[ Home | White Papers ]
Highlights:
What
Are We Waiting For?
Promoting
Personalized Residential and Community Supports in Georgia
Please
send comments, questions, or additional information sources or suggestions
to:
David
Truran
Georgia
Advocacy Office
100
Crescent Centre Parkway, Suite 520
Tucker,
Georgia 30084
(404)
885-1234, WATS: 1-800-537-2329,
Fax:
(770) 414-2948, or email: truran@thegao.org
Report
available at: http://thegao.org/wait.htm
Getting personalized residential and
community supports and services of high quality in Georgia can be difficult and
very time consuming if you have a disability or mental illness. The following highlights are discussed more fully in the
attached white paper.
Court decision and legal advocacy
support for community living for people with developmental disabilities and
mental illness: Georgia’s advocates won a favorable Supreme Court decision
in Olmstead v. L.C. (98-536). State
and national advocates work hard to insure that implementation is favorable.
(p. 2)
The bottom line - Georgia’s fiscal
effort has weakened over the last two and one-half decades: Trace Georgia’s slip from near the top to near the bottom
in almost every category imaginable. (p. 3)
Evidence - nursing home residents and
spending: How many people with developmental disabilities live in
Georgia’s nursing homes? (p. 4)
A trend indicator - change in public
institution residents:
Although Georgia has moved strongly toward community living in the last
few years, there is a good bit of evidence that we are still way behind in
relation to national best practices. (p. 4)
Who is waiting for community services?
Common sense in a politicized debate:
Nationally, there is a great effort underway to count or estimate the number of
people who need community residential and day support services. In some states, few remain unserved. In Georgia, we have to decide if we want to endlessly talk
about counting people in need or if we want to develop a responsive network of
personalized community supports. (p.4)
Georgia takes the question of need out
of the realm of clinical judgment:
With the closure of Brook Run, Georgia answered the question, “who
needs community services,” in a very creative way.
Considering Georgia’s action surrounding Brook Run in light of the
current interest in community services and waiting lists can be very
instructive. (p.5)
These and other issues are addressed
in the full discussion paper that follows.
What
Are We Waiting For?
Promoting
Personalized Residential and Community Supports in Georgia
Please
send comments, questions, or additional information sources or suggestions
to:
David
Truran
Georgia
Advocacy Office
100 Crescent Centre Parkway,
Suite 520
Tucker, Georgia
30084
(404)
885-1234, WATS: 1-800-537-2329,
Fax:
(770) 414-2948, or email: truran@thegao.org
Report
available at: http://thegao.org/wait.htm
Introduction: Ten years ago, a Georgian with a significant developmental
disability requiring community-based residential or other day supports was in
for a long wait. At that time the
projected wait for a community residence, if you didn’t have one,
was 79 years for the state overall and a whopping 112 years for the
two major metropolitan counties, Fulton and DeKalb.
Georgia placed dead last when ranked against ten other states with
similar demographics (GAO, 1989).
Since
this time, Georgia has implemented several Medicaid waiver programs, closed
three separate institutional settings (River’s Crossing, Brook Run, and the
Georgia Mental Health Institute), and moved several hundred people to community
settings of varying quality. All of
this waiver development and movement of people occurred as the community
residential management system changed from a system that was mainly public and
controlled by state and county governments to a system that is increasingly
private and is theoretically controlled by a system of quasi-private regional
boards. Now, at the end of the
1990’s, the State is moving to consolidate the waiver programs and at the same
time insure quality by implementing a state-wide monitoring system for all
people living in community residences funded by the waiver program.
Court
decision and legal advocacy support for community living for people with
developmental disabilities and mental illness: Of
course, this is all challenged by the evolving favorable Supreme Court decision
in Olmstead v. L.C. (98-536), which was affirmed in part, vacated in
part, and remanded back to the lower court.
(Olmstead v. L.C. [98-536],
1999) The fundamental premise in
this case is that people with disabilities will not be served in segregated and
isolated institution-like services or programs that keep people from sharing
places (in homes and neighborhoods) and from participating in significant ways
(in work and school, for example) with typical citizens
(Ezekiel, 1999). The final outcome of this case will come through at least
three major avenues. First, the
resolution of the formal legal proceedings through the court actions and
procedures that are already in place. Second,
the coalition of state Protection and Advocacy organizations will work to insure
that the decisions are interpreted favorably for people with disabilities
nationwide. Third, a coalition of
advocates is growing out of the Disability Law and Policy Network.
This large and diverse group intends to reach out to people in
institutional settings, investigate Georgia’s plans to renovate institutional
space rather than develop community options, and help contribute to a well
developed Olmstead v. L.C. settlement
plan that addresses all of the details of the Supreme Court case as well as
helping develop an “Unlock the Waiting List Plan” and an “ADA Transition
Plan.”
Accurate,
clear, and understandable information is hard to come by: Ten years ago, clear and fairly accurate information was
available regarding community services in Georgia. In 1999, this is not the case.
Although there are clear sources for all of the information presented
below, the information is often reasonably old (1996 or 1997) or not
particularly reliable (those who collected it often place a low degree of
reliability on it for a variety of reasons).
Also,
in 1989, we compared Georgia with about ten other states that, in terms of
overall demographics, compared favorably with Georgia.
It may seem strange, but Georgia and Michigan are still more similar in
important economic, political and geographic variables than, say, Georgia and
Alabama. Compared with these
matched states, Georgia did poorly in 1988.
Were we to use a matched sample today, Georgia would look even worse.
When state comparisons are needed, we will use other states contiguous to
Georgia (Alabama, Florida, North Carolina, South Carolina, and Tennessee)
because these comparisons are easier for most of us to understand.
So,
what follows is a list of relevant areas where good clear information could help
policy makers. service providers, and advocates alike.
We will soon have to decide whether to proceed with this sketchy
information, some of which may become more up-to-date and/or accurate as the
Summer’s publications become available, or to do some hard research in order
to generate some more accurate and useful information.
After the data are together, we will weave them into a more coherent
document. Your thoughts and
comments on any or all of this are welcome.
The
bottom line - Georgia’s fiscal effort has weakened over the last two and
one-half decades:
The fiscal effort rankings fundamentally reflect a state’s overall
commitment to services for people with developmental disabilities.
Annually since 1977, the numbers on community spending, congregate
spending, and total spending have been collected as part of a national effort to
gather useful information on services to people with developmental disabilities. While no such similar information is kept regarding people
labeled with mental illness or other disabilities, we can probably assume that
any state’s fiscal effort would be roughly the same across disability groups.
Fiscal effort is calculated by taking the percent of state-wide personal
income which is devoted to the financing of developmental disabilities services.
Georgia’s selected rankings from 1977 to 1996 follow:
Georgia’s Fiscal
Effort Ranking
Community Spending
Congregate Spending
Total
Spending
1996
1988
1977
Cum.
1996
1988
1977
Cum.
1996 1988
1977 Cum.
46 31
7
42
29
33
25
29
46
37
16
40
In
1977, Georgia was 16th overall in total spending. We ranked 25th in institutional or congregate spending and
seventh in community spending. In
1972, the Georgia legislature passed the “Community Services Act for the
Mentally Retarded,” which was considered one of the most progressive community
service laws ever. Although never
fully implemented, the legislature continued to put money into services
throughout the seventies. Georgia’s
advocates were proud of the relatively high ranking in community spending.
However,
by 1988, Georgia had slipped to 37th in total spending and to 31st in community
spending. This represented a huge
change for the worse in the State’s commitment to people served by the mental
retardation service system. Most
advocates figured that this represented an absolute low in fiscal commitment and
that things would consistently improve. However,
by 1996, the last year for which data are available, Georgia had slipped to 46th
in community spending. So, from
1977 to 1996, Georgia went from being a leader in fiscal effort to being near
dead last in this category (Braddock, 1998).
Evidence
- nursing home residents and spending: Some
estimates put Georgia’s nursing home population of people with developmental
disabilities as high as 2,800. However,
the source of this information appears unreliable.
Current national research puts Georgia’s nursing home population of
people with developmental disabilities at 1,897.
This conservative estimate ranks Georgia sixth overall while the state
weighs in about 11th nationally in population size. So, we are putting people into nursing homes at a rate much
higher than average. In terms of
fiscal commitment to nursing home care, Georgia ranks 10th overall in per capita
nursing home spending (Braddock, 1998).
Another
bottom line - nursing home versus community fiscal effort: Georgia’s overall 1996
nursing home spending effort ranks 10th nationally or 36 places higher than the
overall 1996 community fiscal effort (46th) for people with developmental
disabilities. Georgia, then, puts
360% more effort into putting people with developmental disabilities into
nursing homes than into community residential options.
The average rank of Georgia’s neighboring states is 34 (Tennessee,
11th; Alabama, 18th; North Carolina, 43rd; South Carolina, 47th; Florida, 49th).
Obviously, it is desirable to have few or no people with developmental
disabilities in nursing homes. We
find it outrageous that Georgia places 24 ranks higher in nursing home
utilization for people with developmental disabilities than neighboring states.
More
evidence - utilization rates of all residential services: In 1977, Georgia’s utilization rate was 66 people per
100,000 of state population. In
1997, it was 53. This corresponds
with the decrease in Georgia’s overall fiscal commitment.
Alabama, Florida, North Carolina, South Carolina, and Tennessee had an
average utilization rate of 75 in 1977 and on average increased to 89 in 1997
for an overall change of 14 people per 100,000.
So, in 1977, Georgia averaged 12% lower per capita use of residential
services than surrounding states and now in 1997 averages 40% less than the same
states (Prouty & Lakin, 1998). We
might assume that this is the reason that Georgia has more people with
developmental disabilities in nursing homes than the surrounding states.
A
trend indicator - change in public institution residents: Georgia has closed some institutional settings in recent
years, but this is a national trend that is somewhat dependent on the
development of community settings. In 1996, Georgia ranked 46th in the decrease
in institutional population from 1977 to 1996
(Braddock, 1998). Adjusting
the numbers by taking into account the closure of Brook Run may change this
ranking depending on the
accomplishments of other states. Braddock’s
1999 update should be out soon with numbers that reflect recent changes. Even though Georgia has made changes that seem monumental and
somewhat overwhelming, the trend in relation to the rest of the nation seems to
indicate that Georgia is still moving very slowly toward a community-based
service system.
Who is waiting for community services?
Common sense in a politicized debate: Nationally, there is a great effort underway to count or
estimate the number of people who need community residential and day support
services. Researchers note that the
aging of the nation’s population, improvement in the life-span of people with
developmental disabilities, and our traditional reliance on families to provide
most of the care for people with developmental disabilities are all converging
to have a powerful impact on the
number of people who will have to depend on public services in the years ahead
(Braddock, 1999).
In Georgia, we have a very active Unlock the
Waiting Lists coalition that consists of the Governor’s Council on
Developmental Disabilities, the Georgia Advocacy Office, the Institute on Human
Development and Disability, the Statewide Independent Living Council, the
Georgia ARC Network, the Georgia Council on Aging, People First of Georgia, and
many contributing individuals who have no formal agency or political
affiliation.
Data about who’s really waiting is confusing: There is obviously great utility in having accurate waiting
lists, but the task is daunting. Most
methods for determining waiting list need depend on various categoric program
criterion and eligibility requirements. For
example, all of the waiver programs have very specific eligibility requirements.
Advocates, service providers, and funders all want to know how many
individuals are eligible (often for different reasons).
Any attempt to estimate a viable number of people who need services can
be thwarted simply by requiring that the estimates take into account the number
of people who are actually eligible for a service.
Most agencies simply do not have the staff to perform this kind of
analysis. In addition, whether or
not someone seeks a program often depends upon variables that have nothing to do
with factors that determine eligibility.
For example, one person who came to the community out
of the skilled unit at Brook Run is now no longer on the Medicaid waiver for a
variety of complex reasons. Many
would argue that this person no longer “needs” community support because he
no longer receives it. In fact, his
family has assumed virtually all of his support needs and most of the costs.
In reality, services simply were not flexible or familiar enough to work
with the dynamics of the family’s situation.
We figure that there are hundreds or perhaps even a few thousand such
circumstances in Georgia where families are doing the work of the system either
because services have not been offered in a flexible way or because families
simply do not know that support might be available.
As caregivers age, the State will be called upon for assistance in
situations like this.
It makes more sense to use all hard numbers available
and sociologically accepted methods of estimation to come up with a reasonable
count of those needing services now or in the near future.
These figures should then be used to come up with a long-term service
development strategy that will eliminate long waits for services.
A few other states have been able to accomplish this and many are moving
in that direction now. We
expect Georgia to address these issues quickly and comprehensively.
Which
current institution residents should be served in the community? The national answer to this question is “all of them.”
In 1997, four states were serving no individuals with
developmental disabilities in public institutional settings, so effective ways
can be developed to eliminate institutional settings.
Georgia
takes the question of need out of the realm of clinical judgment: Georgia answered this question another way with the closure
of Brook Run. In this closure
process, individuals or their legal representatives were allowed to choose
whether or not they wanted to live in the community or another institution.
Almost exactly half chose to move to the community (GA DHR, 1998). In
many respects, the very fact that this procedure was successfully utilized
destroys all clinical arguments regarding whether or not a person “needs” to
be in an institution. All of
the residents of Brook Run could have chosen community or all could have chosen
trans-institutionalization, the State did not care. So Georgia has stated loud and clear that eligibility is
totally dependent upon choice. This
clearly recognizes that an effective array of supports can be delivered in any
setting if proper personalized planning is undertaken.
If
current institution residents were queried in a responsible way (not threatened
one way or the other and resource transfers guaranteed), all might choose to
move to the community and therefore should be on the waiting list for community
services. So, all 1,889
individuals with developmental disabilities currently in public institutions
should be considered “on the waiting list.” (Prouty & Lakin, 1998).
At
the moment, we have no reason to believe that the 1,897 nursing home residents
who have developmental disabilities are any different demographically from their
counterparts in public institutions. If
anything, these people may be put into nursing homes simply because they have no
support at home (for example, when elderly parents die).
We believe that no individuals with developmental disabilities should
be living in nursing homes. However,
it may be useful to assume that given the choice model that Georgia has already
employed, all could select community, bringing another 1,897 people to the
overall waiting list.
How
about those people currently living in the community? In
1997, the national Association for Retarded Citizen’s published a study that
showing that Georgia’s community service needs waiting list (those already in
the community who need public community services) to be 1,644 for residential
services, 819 for day or vocational services, and 583 for family support
services.
From
these admittedly skimpy and incomplete numbers we can derive the following
(“Institution to Community” below includes nursing homes):
Georgia’s
Waiting List
(people with developmental
disabilities only)
Institution
to Community Community to Community
3,786
3,046
So
we can safely say that a total of at least 6,832 people with developmental
disabilities are on the overall community waiting list.
Of those, 3,538 are on the community residential waiting list.
So,
a safe answer to the question, “Who is waiting in Georgia?” is “everyone
is waiting in Georgia.” Advocates,
policy makers, and providers may as well go ahead and plan for a substantial
array of community residential and other services because properly serving the
people represented by this conservative estimate would roughly double the size
of the current community residential service system.
At the same time, the numbers for the various categoric waiver programs
should work to refine their estimates.
So,
what is missing? Evolution of a
viable community-based system: Obviously,
the waiting list analysis is very weak in hard data. Advocates and service providers generally agree that the
numbers presented here are low. Clearly
missing is a reasonable estimate of the community residential service needs of
people who have been labeled with chronic mental illness. In addition, there are probably thousands of people currently
living in nursing homes by virtue of a disability that does not fit the
developmental disability definition and are therefore here uncounted.
Individuals fitting this description who live in nursing homes should be
eligible for the Independent Care Waiver.
The
State must have in place a clear, coherent, and public plan for internal and
external oversight and monitoring using the existing quality assurance,
grievance and human rights complaint program, and new mechanisms and
procedures for external monitoring and oversight that will promote the adoption
and implementation true personal planning and funding mechanisms which give
control to the service recipient. The
community system as it is evolving right now often forces people to accept
available options rather than by designing options to fit each individual’s
unique array of strengths and interests.
Sources
Braddock, [et al.], The State of the States in Developmental Disabilities, American
Association on Mental Retardation, 1998.
Braddock, David, “Aging and Developmental disabilities: Demographic and Policy
Issues Affecting American Families,” Mental Retardation, April, 1999.
Ezekiel, Jonathan D., “Pulling the Plug on the ADA? Olmstead v. L.C. and E.W. at the
Supreme Court,” 1999.
The Georgia Advocacy Office, “How Long a Wait? Community Living in Georgia, A brief
discussion of some of the facts and issues surrounding publicly supported
residences for people with developmental special needs in Georgia,”
1989.
The Georgia Advocacy Office, “Is There No Way Home? Community Living in Fulton and DeKalb Counties, A brief discussion of some facts and issues surrounding
publicly-supported residences for people with developmental special needs from
these two counties,” 1989.
GA DHR, “Moving Forward to Community... An Update On the Brook Run Closure
Project,” 1998.
Olmstead v. L.C. (98-536)I, 138 F.3d 893, affirmed in part, vacated in part, and
remanded. Supreme Court
of the United States, 1999.
Status
and trends through 1997, University
of Minnesota, 1998.